Saturday, January 24, 2009

Every week I receive several emails from all over the world asking me all kinds of questions. The following email from a stuttering parent illustrates well the dilemma of what to do. I or we might disagree with claims of magic treatment for children and can live on happily, but as a parent you need to decide on the best course of action to take; even inaction is an action:

I have been stuttering since 4’ish. One of my biggest fears was the potential of genetically condemning my children to this disability. My brother’s daughter, now 15, is also a stutterer. I now have a 2 year old son, who is of course the cutest, smartest, and one of the best communicators... what else is a parent going to say!? But seriously, Reed has been speaking for more than a year and can communicate clearly and in full, thought provoking sentences. About a week ago he asked this simple question, “What are you doing?”, only this time he said, “What are youuuuuuuuu doing?”

Now, being a stutterer, my immediate reaction was definitely not my finest moment. I whipped around from whatever it was that I was doing with a look of sheer terror (I’m sure), and asked him if everything was ok. I asked him to ask me the question again, and he did, and he stuttered in the same manner. I asked him if he was having a problem saying “you”. At this point he recognized my concern and got defensive. I spoke to my wife shortly after and we agreed that we would not draw any more attention to it. I wish I could go back to the moment... oh well!

Anyway, I’ve been paying close attention to Reed’s speech since the incident and have not noticed this level of stuttering on any other word. It only seems to happen when he’s asking the same question, “What are you doing”!? Now, parental logic would say that my reaction caused this to continue. My stuttering logic tells me different. He’s started putting his hand over his mouth while the block is taking place. It even appears that he is frustrated by it?

My question is, should we try the “wait and see” theory that is the common response to this situation at his age? I also don’t want to jump the gun and draw any more attention to it (although the damage might be done).

Friday, January 23, 2009

Articles from the Oxford Dysfluency Conference are now published on the website of the International Journal of Speech-Language Pathology: see here. Here is what Ann Packman, the driving force between the Lidcombe early intervention program together with Mark Onslow, writes on Lidcombe:

Interestingly, however, long-term follow up indicates that some children may start to stutter again many years after treatment with the Lidcombe Program has ended (Jones et al.,2008). This suggests that recovery is not necessarily complete or self-regulated after treatment with the Lidcombe Program.
From a behavioural perspective, it seems that stuttering is brought under environmental control during the treatment and remains so for some years. However, the treatment does not—cannot—remove the initial condition (the underlying neural deficit). Rather, the treatment promotes compensatory neural re-organization which we now know may not be permanent.

It is official, and I share her view (except that I question the strength of short-term effect due to the high natural recovery rate). Lidcombe is far from the perfect and permanent solution. In fact, Packman disagrees with Mark Onslow. I asked him at the conference at the open forum: How come all kids are recovering if there are neurological deficits. He said that it is well known that the brain of kids is plastic enough. Well your colleague seems to agree with me and disagree with you: the treatment does not—cannot—remove the initial condition (the underlying neural deficit). In fact, full recovery of kids in any disorder due to the high plasticity is a myth, a feel-good phrase. Sure, kids' brains are more plastic and can compensate but there are limits. Now if you add the very high natural recovery to this statement, the miracle resembles more a fata morgana.

So does any therapist on Lidcombe make it clear to parents that the treatment does not—cannot—remove the initial condition (the underlying neural deficit)? No! And that's a scandal. It does not of course prevent several of our "expert" therapists turned researchers to making unqualified statements and spreading the myth: Quantitative studies have shown it is an efficacious treatment for eliminating stuttering in children of 6 years and younger. (Rosemarie Hayhow). Research indicates that early intervention is highly successful at normalization of speech development and prevention of stuttering. (Kristin Chmela, Stuttering Foundation of America e-catalogue). Why do they make such statement? Because they have not actually read the original research word by word, and lack the statistical understanding or attitude. For example, I explained to Rosemarie Hayhow my concerns about the Lidcombe trial on statistics, and her shocking reply was that she is focusing more on the qualitative aspects. But yet she is making statements on the trials and thereby propagating myths.

Thursday, January 22, 2009

Greg at Stuttering.Me has scanned and published on-line the official letter he received from NIH: see letter. I have copied the most interesting paragraphs for your benefit:

...We've obtained some interesting findings.., and I'd like to ask if you'd be willing to participate in some additional research studies. We've identified variants in several related genes that we believe contribute to stuttering. You're one of the people with such a variant, and our current goal is to better understand how this can be related to stuttering.

To accomplish this, I'd like to invite individuals to come to the National Institute of Health (NIH) Clinical Center, at our expense, for a more detailed examination. We have no reason to believe you or any of our research participants have any medical condition or disorder. But, given our recent findings, we wish to have careful examinations done by specialists, to make sure we're not missing any subtle symptoms that could benefit from medical attention. Such examination would not involve any invasive procedure (other than another blood draw) and could be accomplished in less than a day.

Wednesday, January 21, 2009

One of my readers Lyla recommended Stuttering Stan Takes a Stand children's book to me: more info on the National Stuttering Association website and an interview with the author Artie Knapp. Reading or giving such books to stuttering kids is certainly a good way to take away some of the pain and embarrassment of stuttering. And please an appeal to all researchers, do not do any research on the efficacy. It is dead-end research. Everyone with a bit of common sense knows that such a book is great to get the message across that you are OK even if you stutter. However, you can write articles and reviews.

Tuesday, January 20, 2009

I came across the extremely funny comedy TV series The Big Bang Theory . I have to say that the scriptwriters are not too far away from portraying us theoretical physicists... I just hope I am not as bad as Sheldon! Or am I? :-(

Monday, January 19, 2009

Can people who stutter recover spontaneously? Here are a few anonymous reports from STUTT-LIST.

I personally know two people who recovered/overcame stuttering. One man ... spent most of his life with a stuttering problem but then worked though it himself. He felt that he accepted that he stuttered and then got on with is life never avoiding and became a VP for sales. He had very little speech therapy.

I have a family member ... who stuttered severely-markedly through grade and high school and through college. He never had therapy but 'became fed up with stuttering' so he decided to overcome it. His first job was selling stock over the phone. His comment was that 'it just went away one day' apparently due to his determined attitude, self-challenging demeanour and eventual perceptual shift as he no longer identifies himself as a stutterer. He never had speech therapy.

I encountered someone who claims to have ended a stuttering problem immediately following a neck adjustment by a chiropractor when he was 12 years old. ... He was about 30 at the time. His responses to the few questions I asked him about the circumstance of his recovery and the nature of the problem he had experienced seemed credible and so did his slightly incredulous demeanour as he related the experiences.

What I have heard are two versions: The first of people who stuttered as kids and teenagers and then gradually they recovered without any conscious intervention on their part. The second of people who stuttered into (early) adulthood and then suddenly decided to change and actively worked on their behaviour, and stuttering gradually reduced. Regarding recovery as a teenage, I tend to believe in spontaneous recovery and then the people associated an event happening around the same time as a cause of recovery. Regarding recovery as adult, I believe in the right moment at the right time where everything came together: ability to focus, attitude change, motivation to work on new behaviour, entry into a fluent phase of life, and so on.

Friday, January 16, 2009

Because people read your blog...so your words have power. what do you think the author of the published paper would feel? Did you just call the research a piece of junk/useless research? If you were in the same position and spent valuable time. And someone calls your research dead-end research? And how does this post help with anything. Why not be more positive...instead of being negative (and the problem is still there and nothing is solved). My suggestion: try to be more positive and talk is cheap. Be a problem solver and offer realistic suggestions, instead of complain, complain, complain :)

Here is my response:

What do you think the author of the published paper would feel?

I cannot care what the author feels. This sounds hard but science and intellectual debate is not about caring about other people. It is about caring about arguments. I write what I have in mind. I only attack someone's arguments or works but not the person itself. He or she might be the nicest person on Earth, might have put in one year of work, or might have been ill-advised by the supervisor; if I don't agree, I don't agree and will say so clearly. I will also not resort to mystical allusion like "I did not fully understand your arguments. Would you mind explaining them again to me. I am confused because I thought that X" but "I do not agree because of X."

I know the author a bit, and I do respect him for what he told me privately, but I simply disagree with some of his statements or directions of research. He is free to disagree with me in the Comment section or a guest post.

Did you just call the research a piece of junk/useless research?
Not as forceful as you just have. I wrote it is dead-end research.

If you were in the same position and spent valuable time. And someone calls your research dead-end research?
Again, it is utterly irrelevant how much time someone spent on something. I know what guy who spent 3 years on a complex computer simulation only to be proven wrong by a top expert in 5 minutes. It is though but it is science. My first reaction would be not be as you imagine. I would ask: What have I done wrong? Is it a dead-end? I would look at his or her arguments carefully, and see whether I really did a mistake. And then I would reply with counterarguments or agree that it is wrong or dead-end. Then I try to get back to that person and give counterarguments. Then either we agree to disagree, because I cannot really refute his arguments nor refute mine. Or I see that he or she is just making bogus arguments because of lack of understanding, intellectual overreach or an emotional and political motivation. Then I might go into political mode or ignore. But

Again I do not fight or see the person making the argument but I fight or see the arguments themselves! Here is how I visualize: I am commander of one army (my statement) and I have soldiers (the arguments) defending it. And someone else launching an attack. So I focus on his soldiers. Either one of us wins and the other gracefully surrenders his army (his statement), or we agree to disagree as no-one won.

My research is not part of me, so if you attack it or my ideas, I am still feeling OK! As a good scientist, you need to find this intellectual detachment from your emotions. In fact, I love being told that I am wrong because then I have learned something new!

And how does this post help with anything.
It is like the Emperor's clothes or the lack thereof! I am pointing out the obvious for me. And I am pointing out what many others tell me privately, but do not dare saying out of fear that the PC and consensus Gestapo knocks at their door. It helps to know what other people think of your research. Even if they are wrong, you can wrestle with their arguments, and you learned something. There is nothing worse for a researcher that being ignored after hard work or being smiled at with a superficial Well Done.

Also, I want to show people and especially students and therapists that it is OK to criticise other research findings. We need more debate in stuttering. And therefore I am moving the goal post of what is acceptable.

Why not be more positive...instead of being negative (and the problem is still there and nothing is solved).
Here is a counterexample. If I see cracks in a bridge or building, should I not report the cracks because I have no solution to getting rid of the cracks and I make the manager of the building feel bad about himself? If I see fraud or mismanagement happing, should I not whistle blow because I have no solution and hurt the feelings and jobs of those who work there? Of course, a solution would be great, but often there are no solutions, and the solution proposed is wrong, too!

This attitude is extremely dangerous in scientific research, because our minds get blinded by social considerations out for fear for the PC and consensus Gestapo. It is OK to point out weaknesses and be negative in research. Of course, doing therapy or organising a party is a whole different matter, where you need to work with other people and find common interests and goals.

My suggestion: try to be more positive and talk is cheap. Be a problem solver and offer realistic suggestions, instead of complain, complain, complain :)

You drive me completely insane! :-) You have not understand what science is about. Yes, in therapy or management or politics, it is all about problem solving and consensus building but not in science or intellectual debate, intellectual honesty is very very important. There is only one truth, but in social interaction there is none. You say what you have in your mind so that a debate can arise. You would be surprised but I am very consensus focused when it comes to non one-truth issues! But on science, just over my dead body! :-)

Thursday, January 15, 2009

We hear a lot about therapy for young kids and for adults. But what happens with kids between 6 and 12? What is the adult version of Lidcombe or demands and capacities? And what is the kid version of fluency shaping and disfluency shaping (van Ripper, post block modification).

Wednesday, January 14, 2009

Read Greg Snyder's article on his personal experience of being informed that his DNA shows evidence of polygenetic mutation: here.

Apparently, they ... found something. Out of all the (hundreds, if not thousands) of (stuttered blood) samples that have been taken (worldwide), they found 21 participants with a unique polygenetic mutation. (In this case, the co-occurrence of 3 mutated genes). I am one of the 21. While I don’t know much of their findings, he did share that two of these three mutated genes are associated with serious (i.e., fatal) childhood diseases. I don’t exactly know what this latter finding means, since I (along with 20 of the 21) am (are) perfectly healthy. (For all I know, we’re all one mutated gene away from *fill in the blank*.) In any event, they want to fly me up ... for a full work-up. I’ll accept the offer, and keep posting about it if there’s interest. [...]

But to get the call from a world-renowned expert saying that they found something, and you are one of the 21. That was quite surreal indeed.

I just looked at the costs of attending the IFA (International Stuttering Assoc.) 2009 conference in Rio de Janeiro: see my post on speakers . I get to about 2000€, which includes 275$ on conference fee, more than 1000€ on flight, 500€ on accommodation, and extras. Of course, I could look at it as a 2 week holiday in Brazil with 3 days break at the conference. Still not cheap... The deadline for submission is End of February... so I still have some time...

Tuesday, January 13, 2009

I just heard that the Pagoclone study will start in March at several center across the US. This info fits the press release from last year: The placebo-controlled study will involve approximately 300 patients with stuttering in the U.S. treated for a period of six months and is expected to commence enrollment by Q1 2009.

So we should not expect any results until March next year earliest. Six months treatment period plus at least 3 months logistics (i.e. not everyone will be enrolled on same day) plus 3 months analysis time, and maybe a few months of observation time.

Here is my prediction: If they are good scientists, they will get a null or minor impact result above placebo and repeated measurement effect. If they are bad scientists, they will get a moderate result good enough to market the compound for stuttering. However, they might be able to show that it has a good impact in some people, but they then must convince me that this is not a random effect.

Voodoo expert Dave Rowley made me aware of a post on voodoo correlation in social sciences: see here. Neurocritic is a blog that deconstructs the most sensationalistic recent findings in brain imaging, cognitive neuroscience, and psycho pharmacology. Clearly, we need to be careful when analysing imaging data, especially when correlating to other variables. And I am sure some brain imaging studies on stuttering have problems, too.

Monday, January 12, 2009

Ora sent me his detailed notes on the Maguire interview on StutterTalk: see here. I briefly reported on the interview here. Jerry Maguire is involved in the Pagoclone trials. I visited him some time ago at the opening of his centre: see here.

[These are Ora’s notes, not a transcript]

Maguire: In the past, not much attention to was devoted to medical therapies for stuttering. In the 70s people tried using some of the older meds for schizophrenia such as haldoperidol – shown to at least reduce stuttering symptoms. But side effects were pretty great.

Things lay fallow for a couple of decades.

More recently people have have explored dopamine blockers. Dopamine is involved in movement, and they also believe it’s involved in speech. They notice that stuttering particularly affects the beginning of the word. The theory is that by lowering dopamine levels in the brain, you can improve the timing and the initiation of speech. Those medications were developed for schizophrenia and bipolar disorder (not that there’s any relation between schizophrenia/BP disorder and stuttering, just that the same neurotransmitter affects both). The original idea for the use of these medications in stuttering was spawned by the fact that Tourette’s syndrome looks similar to stuttering: also, they both begin in childhood, they have a male-to-female ratio that’s very similar.

Risperdal (risperidone) was the first of these new generation of dopamine blocking medications. They studied it and found it to be effective. It reduced stuttering symptoms by 40-60%, in some individuals even higher. Tolerated pretty well; they did see some potential side effects. It can raise prolactin, which may cause sexual dysfunction. Some weight gain, milder amounts of weight gain. In higher doses than they used, such as the dosages used for bipolar disorder, it can cause muscle rigidity, even tardive dyskinesia. Potentially long-term studies should be done. (The dosage that they studied was 0.5 – 2 mg / day.)

These studies led to another compound called olanzapine (Zyprexa), developed in mid-late 90s for schizophrenia and bipolar disorder. They did a double-blind placebo-controlled study, found it to be effective for stuttering, reducing stuttering symptoms in the majority of individuals treated – up to 70% reduction in 70% of the patients. The side effects: it caused an appetite increase in many/most of the individuals, leading to weight gain. The most concerning side effect in at-risk individuals is the potential for diabetes.

Maguire himself tolerated risperidone quite well for about two years, then switched over to olanzapine for about ten years. Did have some weight gain – about 20 pounds – but he was between ages of 30 and 40, stopped exercising, got married, so it’s hard to tell the cause of the weight gain.

Recently there are medications which work on the dopamine system but do not have the weight gains or metabolic concerns associated with olanzapine, at least in adults. He’s just published a case report on Abilify (aripiprazole) – another medication for schizophrenia and bipolar disorder. It’s a partial dopamine blocker, so it may even work better at lower dosage. A weight-neutral compound. They’re really excited about it.

Maguire is now on ziprasidone (Geodon). Also a dopamine blocker. Weight neutral. Does have some potential, very rarely, for heart conduction problems, so an EKG is needed beforehand.

He’s a firm believer that these medications would work better with speech therapy – synergistic effect. They’ve seen that effect with other disorders of the brain such as OCD and major depressive disorder, that they work better when the medication is combined with the therapy, than with the medication alone. The medications are not a complete cure; they don’t work in everyone, and it’s not a complete effect.

These medications are not going to totally remove the stuttering. He finds that the types of stuttering where it’s most beneficial is for people who have secondary characteristics (eye blinks, facial grimaces). He hasn’t studied it much so well, but in the patients he’s treated, that’s what he’s observed.

Of course, they’re using medications that are “borrowed” from another condition (schizophrenia / bipolar disorder). With pagoclone, now in clinical trials, they now have a medication that is not borrowed in that way. It’s completed Phase II trials. Originally derived as an anti-anxiety agent. It doesn’t work on the dopamine system, but on the GABA system, which is involved in the anxiety response. (It’s known that the stuttering syndrome has a component of anxiety, but stuttering is not caused by anxiety.) It’s tolerated very well; so far it’s been prescribed in over 1000 individuals (thousands?0 – 100+ for stuttering, but over 1000 for other disorders. Appears to be tolerated much better than the dopamine-blocking medications. Their theory is that it’s a back-door way to modify dopamine. It may be a safer way than the dopamine blockers, with the added benefit that it reduces anxiety. The greatest benefit of pagoclone its tolerability. Tolerability appears to be very high, the side effects appear to be very low, just a little sedation and headaches.

Looks like the Phase III pagoclone study will start pretty soon. (They’ve finalized the research article. They presented at the Oxford dysfluency conference.) The next pagoclone study will likely have centers around the US. [OM note: since the date of the interview, they’ve announced that they’ll be doing Phase II-b studies, not Phase III immediately.]

With pagoclone they’ve seen 20-40% efficacy [unclear if he meant 20-40% of individuals or 20-40% reduction in symptoms], but they’ve seen individual respond up to 80% reduction in symptons, In general, Phase II trials may not see the full effect size because they’re using one fixed dose. In the next phase they’ll try a range of doses. In Phase III they’ll test in more individuals and then tune the dose, and even increasing the length of the double-blind phase, because with pagoclone it appears that the longer you stay on the medication, the greater the effect.

Interviewer: We know that with speech therapies they often work well at the beginning but the benefits reduce after a while. What about these medications?

Maguire: For the dopamine blocking medications I’ve been discussing today there’s been a persistence of effect. At times they’ve observed what they think is of a recalibration of the receptors in the brain, so that may had to increase the dosage over time, though rarely. In the open-label phase of pagoclone, the response tends to be persistent. Not everyone responds, but for people who do respond, the response tends to be persistent. Also, pagoclone seems to not affect the naturalness of speech. (Interviewer: this is a common deterrent to maintaining the benefits of speech therapies; people sometimes prefer stuttering to unnatural speech.)

Maguire is not on pagoclone because FDA rules bar an investigator from being on the medication that he’s studying.

Interviewer: Other drugs? One researcher has reported on a “cocktail” of citalopram (Celexa), clomipramine (Anafranil) and alprazolam (Xanax ) for a small group (three people?)

Maguire: That makes sense in that works on GABA, but the problem with Zanax is that there’s a tolerance built up, so that an initial effective dose of 0.5 mg may have to be increased to 1 or 2 mg in a month or two. A tolerance is built up; risk of addition. (The good thing about pagaclone is that it appears not to have an addictive effect.)

Citalopram (Celexa), an antidepressant, works on the serotonin system. It may decrease the social anxiety of stuttering.

Clomimpramine is a tricyclic antidepressant and it does have a dopamine effect. But it’s got side effects, such as constipation, light-headedness. Also, sexual dysfunction, even higher than risperdal.

One thing he’s concerned about in general: that people are going to read about these drugs and try them, but at a too-high dose, because the standard doses are calibrated for schizophrenia.

For the drug that he’s taking, ziprasidone (Geodon), his dosage is about 1/8 the typical dose for bipolar disorder.

Maguire’s recommendation: combine medical therapy with a well-qualified speech-language therapist. His center at University of California at Irvine has received a grant where they can provide consultations via telemedicine to people anywhere in the world. People need a webcam and a high-speed Internet connection. Consultation over the Internet, then work with people’s own physician and monitor the level of care. He’d like to set up a number of centers where people could work both with speech therapists locally and with his center in California for the drug therapies, or even vice versa, with his patients in California working with speech therapists remotely. He knows a lot about the medication, but has no expertise in speech language pathology, except for his own personal therapy for his own stuttering. But there’s lot more to the stuttering person than the medical aspect, and he’d like to collaborate with people who use different treatments. Monotherapy (such as drug therapy) may work in some people, but will it persist? He thinks the best approach is a multimodal approach combining drug therapy and behavioral study. (And the interviewer (Greg) added: and perhaps prosthetic devices. [Does he mean masking devices such as SpeechEasy?])

Friday, January 09, 2009

I talked about the large-scale study by the Onslow/Packman group here. They studied more than 1500 kids from age 2 to 3. Another worthwhile observation is

Onset often occurred suddenly over 1 to 3 days (49.6%) and involved the use of word combinations (97.1%).

Isn't a sudden onset impossible if I and many other claim neuronal damage due to genetics or a neurological incident? Not really. Think of a car that has a defective motor that overheats if you hit 140 km/h and drive in warm weather. If you buy your car in Spring and drive slowly for the first few weeks as the manufacturers suggest, you will not notice the damage. The sudden onset could show the switch of the brain from simpler speech to full-blown complex speech. Their observation that word combinations are involved might be an important clue. So what about those who do not have a sudden onset? Maybe their problems are less severe. I do not know.

As I said a few times: We need more research on the period before onset. And I am glad they did this study. We commit a fallacy by studying the period after onset assuming that that's the moment the issue started! It starts much earlier!

Don't tell me that you have to do research on kids just after onset, because before onset is so much more difficult. My answer is: Well, then don't do any research! Do something else, something productive: spend more time with your family, do more therapy, join forces with other researchers, and so on!

social penalties associated with stuttering appear to be apparent to fluent individuals, especially in areas of vocation, romance, and daily activities, suggesting that nonstuttering individuals, when assuming the role of PWS, are capable of at least temporarily feeling the negative impact of stuttering.

Is this constructive research? I fear it's dead-end research like many other pieces of stuttering research. Ask yourself three questions: Is the result obvious? What have we learned? What's next? For me, the result is so obvious, that I cannot understand how someone spends his or her valuable time on such a project, unless I have a student and give him or her a project to learn about data collecting and analysis. Could you not have got there by asking a few non-stuttering friends? In fact, even I who stutter could put myself in the perspective of a stutterer, and would say the same? And, I am not accepting the argument: Science is about looking at everything carefully. The obvious can turn out to be less obvious. In 99% of the cases, the obvious turns out to be the obvious. Do you really want to run 100 projects to find the 1%. Moreover, it's about an n-order consequence. Gene to neurological damage to delay in sound initiation to stuttering to secondary symptoms to psychology to social behaviour. How can such a project result in finding anything non-obvious on a more fundamental level. We have just learned what we knew anyway. You can argue that we now know it with a big more certainty. Actually, I would argue that we have lost knowledge, because we believe that we know more but to be sure we need to replicate the experiment and do checks. So had we not done the experiment and said: this is obvious. We would engraved in our minds: We assume this as obvious so we are more careful to use this as a fact.
What can you do with the result? You can use it as a political tool maybe, or as a motivation to argue that the way we need to create awareness is to put the fluent speaker in our shoes. WOW! But could we not have made this argument anyway?

Wednesday, January 07, 2009

I have updated the list of the latest posts from stuttering blogs (see right border). Now you can see the latest in the stuttering blogosphere from my blog. Make TheStutteringBrain your starting point! I kicked off Norbert Lieckfeldt from the British Stammering Association, because he has not posting for 5 months. It's a though market out there. But I added three very active blogs: StutteringHub, Indian blog, and Stuttering is cool.

I also have a Sponsored Link section. If you are a serious party, you can ask for a sponsored link. For example, if you want to advertise your conference or workshop, your books, or your professional practise. It is worthwhile because I have between 800-1000 unique visitors per week. I only accept non-controversial ones. For example, I already decided not to run Google Ads, which will cost me some money, and I refused a link request by Janus / SpeechEasy.

I am aware that my design is not very cool but at least it is functional. I am on blogger.com and it is difficult to get something better. Maybe I can play around and increase the width of the posts a bit.

Let me know if you have any ideas of improvements. But don't write "change the blogger!" ;-)

Monday, January 05, 2009

Misleading stutterers is not just about claiming a cure in 9 minutes, in 15 days or only when you are working hard enough. That's the obvious way to mislead. Have a look at the Speech Easy device website produced by Janus Development. They are the masters in perfection. I'll expose two of their tricks: sublime messaging, and biased reports on success. And I spare you with the go-to-clueless-Oprah-to-get-approval trick; it is too obvious.

Read the message on the main page: Do You Want to Stop Stuttering? You are not alone. While you will not stop stuttering completely (there is no cure for stuttering), we can help you take back control of your speech, and your life. A stroke of marketing genius. At first sight, beautifully compensate speech. As their coporate mission state: We are passionate in our mission to help people who suffer with speech disorders. They say the right things: no cure, therapy is about taking control, and they acknowledge our pain and fear. Now switch on your Karl Rove, and read the passage again: Do You Want to Stop Stuttering? You are not alone. While you will not stop stutteringcompletely (there is no cure for stuttering), we can help you take back control of your speech, and your life. That is what the brain reads, because that's what the brain wants to read. And, acknowledgement of our pain and fear turns on the fear and pain of the reader. Read on: You'll no longer fear social functions, avoid ordering food at a drive through, or keep quiet when you really want to speak out. Passionate about people who stutter? Or passionate about lowering the inhibition of stutterers and their families to make informed decisions?

You might disagree with me on sublime messaging, but you cannot disagree with me on the misleading presentation of evidence for efficacy. Let's bit a bit nerdy and go through the Professionals section and Efficacy/Research subsection. There are four topics: Published Abstracts, Bibliographies, Ongoing research, Case Studies, and FDA Information.

Let's start with the Published Abstracts. The website states: The treatment of stuttering and the Speech Easy fluency device are the subjects of the following abstracts of six selected published articles, and then they list the six articles' abstracts. The first five articles are from the East Carolina University group based in Greenville. Note that Janus Development, the seller of the Speech Easy device, is also based in Greenville. This is not a surprise because it is a spin-off from the university as far as I know. Are there conflicts of interests? Should they not at least make public this relationship? There is only one non-Greenville article from a Canadian group that I have never heard of. But, be aware they have done nothing wrong, they just point us in a direction. Everyone has the right to point someone in a direction, right?

The bibliography is a misnomer as it seems to be the list of publication of the Greenville group. A simple link to Pub Medline gives a much better overview of the field: click here. I find 40 different published articles, notably from Professor Howell at University College London. The idea of the device is not new, and other groups have done efficacy studies. Why only the Greenville group's research? Again, nothing is legally wrong, right?

Let's move on to the Archilles' heel, Ongoing Research. Again, it is factually correct, but highly highly misleading. The website mentions two efficacy studies: one by Molt, and the other related to Parkinson. First, we can agree that the Parkinson study is useless in the context it is presented, especially because other relevant outcome studies are completely ignored! So let's look at the Molt study. The Molt study started in November 2004 (according to press release). It is funded by Janus and there is still no published article four years later. I attended a lecture where he presented preliminary results, at the Dublin IFA conference. His talk and approach to research did not strike me as particularly rigorous, especially the way he represented his data graphically was very atypical to a trained scientist. He is more a speech therapist than scientist and intended well, and clearly warned that the results are preliminary. There were only 12 patients. What happened afterwards? I vaguely remember that someone told me that he was ill. Does Molt agree with the way they are characterizing his research. The key question is: Why do they not mention the other studies that have started after Molt's study and that are published? The answer is easy: the result is less than promising. Forget the Molt study. They should publish those two recent studies.

They are creating the illusion that the device is well supported by evidence, and that the actively seek the evidence. It is obvious that they don't. They are effectively hiding those two articles from the reader by not quoting them, and thereby mislead people. But again, it is legal. Every single statement is factually correct.

Let's talk about the last two topics briefly. Case Studies: They are reports from therapists. Most refer to short-term effects: we tried it and that's what happens. I wonder how many therapists wrote positive fluency reports about me, and here I am... FDA Information: As far as I understand, the FDA says that the device is not causing death or something like that and so you can sell it. Nothing about efficacy, but it sounds good.

To summarize, Janus is clearly misleading customers by not referring to ALL published outcome studies.

Saturday, January 03, 2009

I am known for being highly critical of the Onslow/Packman group for their outcome trials (especially the pseudo random control trial) and other research conducted to prove Lidcombe treatment efficacy. However, this time I have to praise them for their recently published article: Reilly, Onslow, Packman et al. Predicting Stuttering Onset by the Age of 3 Years: A Prospective, Community Cohort Study. Pediatrics. 2009 Jan;123(1):270-277. See abstract here and below:

METHODS.

Participants included a community-ascertained cohort of 1619 2-year-old Australian children recruited at 8 months of age to study the longitudinal development of early language. The main outcome measure was parental telephone report of stuttering onset, verified by face-to-face expert diagnosis. Preonset continuous measures of the child's temperament approach/withdrawal) and language development were available. Information on a range of predictor measures hypothesized to be associated with stuttering onset was obtained (maternal mental health and education levels, gender, premature birth status, birth weight, birth order, twinning, socioeconomic status, family history of stuttering).

RESULTS.

By 3 years of age, the cumulative incidence of stuttering onset was 8.5%. Onset often occurred suddenly over 1 to 3 days (49.6%) and involved the use of word combinations (97.1%). Children who stuttered were not more shy or withdrawn. Male gender, twin birth status, higher vocabulary scores at 2 years of age, and high maternal education were associated with stuttering onset. The multivariable model, however, had low predictive strength; just 3.7% of the total variation in stuttering onset was accounted for.

CONCLUSIONS.

The cumulative incidence of stuttering onset was much higher than reported previously. The hypothesized risk factors for stuttering onset together explained little of the variation in stuttering onset up to 3 years of age. Early onset was not associated with language delay, social and environmental factors, or preonset shyness/withdrawal. Health professionals can reassure parents that onset is not unusual up to 3 years of age and seems to be associated with rapid growth in language development.

I do not have the full article but here is the key message:

1) The incidence is 8.5%. We can translate this into a recovery rate if we assume that 1% of adults stutter. 11.8% of 8.5% do not recover and become the 1%, which means that 88.2% of kids who stutter recover. There will be some statistical error margin and the 1% is an estimate, but the recovery rate should be between 85 and 90%! This is high compared to other studies, but not too far from others sources which refer to a 70 to 80% recovery, and their study should be very reliable, especially considering the very decent sample size of 1600 and their expertise in identifying stuttering.

2) There is no clear and strong correlation with any hypothesized risk factors. They did find higher incidence for male, and other factors. But we need to be careful. I need to have a look at their statistical analysis, given that many variables were tested for and my generally bad experience in former statistical analysis by the group and the field in general. I would not be surprised if only the factor male is very significant.

Here is the implication in my view:

For 1) It must now be clear to everyone that the recovery rate is very high. No wonder therapists can claim such wonderful successes in treating children that would have recovered anyway. Ironically, the BSA and Leys wrote in support of early intervention by claiming a 90% success in treatment: see here. Well you could well get this without treatment, too! (You can still get out by arguing that only severe cases get to treatment where recovery rates are much lower.) The high rate supports my call for considering the natural recovery rate in outcome trials for kids, and this has not been done properly yet. They are all deluding themselves with their outcome trials. Oh and I forgot to say that the famous Lidcombe "random control" trial has also a recovery rate of 84% which fits nicely with their latest article if you assume no treatment effect for Lidcombe!

For 2) It is no surprise to me at all that there is no correlation, and this fits perfectly with the picture that kids start stuttering due to some internal mess-up, either genetic and/or neurological damage. It might correlate to some stages of development but only because this stage happened at the same time when the brain puts it all together to produce automatic speech.

Friday, January 02, 2009

A common fallacy in ethics: well intended actions have a positive impact. If you mean well, your actions might well have negative consequences instead of the well intended. For example, a mother whose son is heavily indebted intends to do good by helping him out financially, but in fact only supports his bad behaviour. Or, an ecologist wants to eliminate nuclear power plants with the well intended aim to protect us from environmental damage, but what are the consequences? Bigger reliance on air-polluting coal plants. Are other forms of energies better? I just read about the devastating consequences of a well-intended tax law by the German government: they support solar cells on private houses in cold Germany which has provoked an increase in the price of solar cells such that some very sunny African countries cannot afford them any more! It is a big big problem in our complex world as few see the hidden strings that intertwine our world: cut one and you affect others.

We must judge actions not by our intentions but by their impacts. Let's look at Leys' effort to make google filter out cure adverts for stuttering treatment. It is a well-intended idea in principle but what will be the impact?

Positive impacts:a. The public hears less about cures on stuttering which helps us to change public perception on stuttering,b. serious therapists can better compete with crackpot onesc. the lack of cure adverts will force stutterers to study different offers in more detail.d. stutterers will have less pressure from families or friends who refer them to these offers.e. shows that the individuals in the stuttering community and NOT the consumer associations can make a difference and take on crackpots: using blogs and youtube.

Negative impacts:a. less free speech on commercial ads hereby strengthening the establishment's view. What if someone suddenly found a cure, can he not advertise it?b. we only hit the cure crackpots, but are treatments like fluency devices, medication, stuttering treatments proven to be better than those crackpot treatments? They might both be ineffective!

Null impacts (also negative because we could have spent our time otherwise):a. Will the We will cureyou not be replaced by I do not make cure claims but if you work hard enough you can achieve fluency? Is the cleaning lady better off as a facility assistant and the secretary happier as an executive assistant? Is it not the same? In fact, maybe we can detect crackpots better now, because they are the only one who make cure claims?

b. crackpots find always find other ways to trick people.c. less stutterers will start a therapy because there is no cure claim to motivate them.d. TV shows will still show cure-like therapies.

Decide for yourself. If you want to hear my opinion, I don't care about my analysis. It's about sending a signal to everyone who is dealing with stuttering: crackpots, therapists, researchers and the world. Get your act together: present the facts, check your evidence, engage in real debates, and take on board feedback. Or you get into trouble with us! Especially to the professionals, don't get too comfortable just because you can call yourself therapist or researcher! Your impact counts and not what you are.

Thursday, January 01, 2009

I have just listened to StutterTalk's interview with Leys Geddes. Leys is currently campaigning for google to refuse adverts that claim cures for stuttering: see also here and here . His arguments have convinced me that it is of utmost importance for us as a community to fight these myths. The Internet is everywhere and it shapes public opinion. We need to take over the control of the message, and educate the others. Every ad on cures that comes up during a search re-enforces the view that stuttering is easily curable and that we do not work hard enough to cure it. The desperate ones will fall for the ads, and our mothers or grannies will pester us to enrol!How can we change Google's mind? I cannot believe that they feel strongly about this. Revenues will hardly be affected. Ever heard of Google's maxim? Don't be evil. It is probably just one person within who currently blocks it. Maybe it was Friday afternoon and she wanted to start the weekend break early. Maybe she doesn't know someone who stutters.If you have any idea or inside contacts to google, let me or Leys know. If you are a self-help group close to the headquarters, go there with a sign post saying STOP CURE ADVERTS! :-)

A main point of this article is that positive results are far more likely to be published than negative results. Although this article concerns the distorting effect of drug companies’ sponsorship of drug trials on the published results of those trials, the same effect is likely in other fields (such as stuttering research) because of the tendency to publish positive results and ignore negative results. And of course, even without the corrupting influence of the Big Pharma money, stuttering research is pervaded by conflicts of interest simply because people have a personal interest in positive results.

Here are a couple of highlights (italics added):

“In view of this control [the control that drug companies typically have over drug trials] and the conflicts of interest that permeate the enterprise, it is not surprising that industry-sponsored trials published in medical journals consistently favor sponsors' drugs—largely because negative results are not published, positive results are repeatedly published in slightly different forms, and a positive spin is put on even negative results. A review of seventy-four clinical trials of antidepressants, for example, found that thirty-seven of thirty-eight positive studies were published.[8] But of the thirty-six negative studies, thirty-three were either not published or published in a form that conveyed a positive outcome. It is not unusual for a published paper to shift the focus from the drug's intended effect to a secondary effect that seems more favorable.”

“Many drugs that are assumed to be effective are probably little better than placebos, but there is no way to know because negative results are hidden. One clue was provided six years ago by four researchers who, using the Freedom of Information Act, obtained FDA reviews of every placebo-controlled clinical trial submitted for initial approval of the six most widely used antidepressant drugs approved between 1987 and 1999—Prozac, Paxil, Zoloft, Celexa, Serzone, and Effexor.They found that on average, placebos were 80 percent as effective as the drugs. The difference between drug and placebo was so small that it was unlikely to be of any clinical significance. The results were much the same for all six drugs: all were equally ineffective. But because favorable results were published and unfavorable results buried (in this case, within the FDA), the public and the medical profession believed these drugs were potent antidepressants.”